National Healthcare Quality and Disparities Report
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Search All Research Studies
Topics
- Access to Care (1)
- Caregiving (1)
- Children/Adolescents (2)
- Chronic Conditions (4)
- Decision Making (1)
- Diabetes (1)
- Education: Patient and Caregiver (1)
- Healthcare Delivery (1)
- Health Information Technology (HIT) (1)
- Health Services Research (HSR) (1)
- Medication (2)
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- (-) Patient-Centered Outcomes Research (6)
- Quality of Life (2)
- (-) Sickle Cell Disease (6)
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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 6 of 6 Research Studies DisplayedSingh SA, Bakshi N, Mahajan P
What is the future of patient-reported outcomes in sickle-cell disease?
Sickle cell disease (SCD) is a complex, chronic disease caused by abnormal polymerization of hemoglobin, which leads to severe pain episodes, fatigue, and end-organ damage. Patient reported outcomes (PROs) have emerged as a critical tool for measuring SCD disease severity and response to treatment. In this study, the authors reviewed the key issues involved when deciding to use a PRO in a clinical trial. They described the most highly recommended generic and disease-specific PRO tools in SCD and discussed the challenges of incorporating them in clinical practice.
AHRQ-funded; HS024953; HS026622.
Citation: Singh SA, Bakshi N, Mahajan P .
What is the future of patient-reported outcomes in sickle-cell disease?
Expert Rev Hematol 2020 Nov;13(11):1165-73. doi: 10.1080/17474086.2020.1830370..
Keywords: Sickle Cell Disease, Pain, Quality of Life, Chronic Conditions, Patient-Centered Healthcare, Patient-Centered Outcomes Research
Badawy SM, Payne AB
Association between clinical outcomes and metformin use in adults with sickle cell disease and diabetes mellitus.
This study tested the hypothesis that metformin use for treatment of diabetes mellitus is associated with fewer sickle cell disease (SCD) adverse outcomes and lower health care utilization among patients with SCD and diabetes mellitus. This retrospective cohort study used data from MarketScan Medicaid claims for 2006 to 2016. SCD patients who were metformin users and nonusers were compared. Patients on hydroxyurea, insulin, or iron chelation were excluded. Metformin was found to be associated with significantly fewer inpatient and emergency department encounters in adults with SCD and diabetes mellitus.
AHRQ-funded; HS023011.
Citation: Badawy SM, Payne AB .
Association between clinical outcomes and metformin use in adults with sickle cell disease and diabetes mellitus.
Blood Adv 2019 Nov 12;3(21):3297-306. doi: 10.1182/bloodadvances.2019000838..
Keywords: Sickle Cell Disease, Diabetes, Chronic Conditions, Medication, Outcomes, Patient-Centered Outcomes Research
Crosby LE, Walton A, Shook LM
Development of a hydroxyurea decision aid for parents of children with sickle cell anemia.
This study developed a decision aid for use of hydroxyurea for parents of children with sickle cell anemia. There are national evidence-based guidelines, but they do not offer strategies for implementation. A multicomponent decision aid was developed via a needs assessment, clinic observations and iterative feedback. The decision aid was considered useful by the 75 parents and 28 clinicians who participated in all phases of the study.
AHRQ-funded; HS021114.
Citation: Crosby LE, Walton A, Shook LM .
Development of a hydroxyurea decision aid for parents of children with sickle cell anemia.
J Pediatr Hematol Oncol 2019 Jan;41(1):56-63. doi: 10.1097/mph.0000000000001257..
Keywords: Caregiving, Children/Adolescents, Chronic Conditions, Decision Making, Education: Patient and Caregiver, Medication, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Sickle Cell Disease
Brennan-Cook J, Bonnabeau E, Aponte R
Barriers to care for persons with sickle cell disease: the case manager's opportunity to improve patient outcomes.
The purpose of this paper was to review the barriers to care for patients with sickle cell disease (SCD). Chronic pain and the perception of addiction, implicit bias, frequent hospitalizations and emergency department visits, clinician and patient knowledge deficits, and SCD stigma all impede the ability to provide evidence-based care for patients with SCD. The authors assert that case managers can coordinate and advocate for appropriate care that improves patient outcomes.
AHRQ-funded; HS024501.
Citation: Brennan-Cook J, Bonnabeau E, Aponte R .
Barriers to care for persons with sickle cell disease: the case manager's opportunity to improve patient outcomes.
Prof Case Manag 2018 Jul/Aug;23(4):213-19. doi: 10.1097/ncm.0000000000000260..
Keywords: Access to Care, Healthcare Delivery, Health Services Research (HSR), Patient-Centered Outcomes Research, Sickle Cell Disease
Badawy SM, Barrera L, Cai S
Association between participants' characteristics, patient-reported outcomes, and clinical outcomes in youth with sickle cell disease.
Researchers studied the effects of sickle disease (SCD) on the quality of life (QOL) on youths with the disease. Participant characteristics, chronic pain, and medication adherence were measured against clinical outcomes. Older and female participants had worse QOL than males overall.
AHRQ-funded; HS023011.
Citation: Badawy SM, Barrera L, Cai S .
Association between participants' characteristics, patient-reported outcomes, and clinical outcomes in youth with sickle cell disease.
Biomed Res Int 2018 Jul 18;2018:8296139. doi: 10.1155/2018/8296139..
Keywords: Children/Adolescents, Outcomes, Patient-Centered Outcomes Research, Quality of Life, Sickle Cell Disease
Jonassaint CR, Shah N, Jonassaint J
Usability and feasibility of an mHealth intervention for monitoring and managing pain symptoms in Sickle Cell Disease: The Sickle Cell Disease Mobile Application to Record Symptoms via Technology (SMART).
This article describes the feasibility of the Sickle cell disease Mobile Application to Record symptoms via Technology (SMART), an mHealth app developed to help sickle cell disease patients monitor and manage their day-to-day symptoms. The researchers concluded that that SMART is a useable and feasible method for monitoring daily pain symptoms among adolescents and adults with sickle cell disease-related pain.
AHRQ-funded; HS022989.
Citation: Jonassaint CR, Shah N, Jonassaint J .
Usability and feasibility of an mHealth intervention for monitoring and managing pain symptoms in Sickle Cell Disease: The Sickle Cell Disease Mobile Application to Record Symptoms via Technology (SMART).
Hemoglobin 2015;39(3):162-8. doi: 10.3109/03630269.2015.1025141..
Keywords: Chronic Conditions, Health Information Technology (HIT), Patient-Centered Outcomes Research, Sickle Cell Disease, Telehealth